How long do you wait?

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Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 2/20/2007 12:07 PM (GMT -7)   
Hello everyone!! I have been experiencing Optic Neuritis for the past week or so. How long would you wait to call doctor, if you even call at all. I feel that is all I do. Every other month it seems that I relapse. This is the first time I've had this since dx. Do I wait until it gets worse? Do I really need the meds?
If I wait it out is there a chance it will not recover 100% to were I was? I do not fully understand this aspect of MS at all.
This will be my 5 or 6 relapse in under 2 years. UUUUGgghhhh



On a positive note: I've taking all injections since my start of Copaxone Feb. 1 WOOohhoooo

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/20/2007 12:44 PM (GMT -7)   
Hey Buckeye

Good to see u here again! I'm sorry u'r having probs and they seem to linger so much. I've never had ON, not dx'd with ms either, so can't speak from experience, but would suggest u call u'r doc now. There may not be anything more they can do than to note it on u'r record, but i'd suspect they'll want to treat u. I know u'r tired of the meds and relapses, but u really do need to report things that are recurring at such close intervals. Maybe revisit the ms med u'r using (copaxone) since u'r relapsing so much in such a short time. Best wishes to u and please let us know how u'r doing.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/20/2007 1:14 PM (GMT -7)   

I'm not sure I understand this: have all of your relapses been optic neuritis?  I'm a real wimp about my eyes..if there's something not right there, I'm calling the doctor.  And I think optic neuritis is the one major symptom that steroids can actually help.

Otherwise -- when I was having relapses, I'd only call the doctor if the relapse caused me to not be able to "perform activities of daily living" - -I couldn't stand, feed myself, dress myself, toilet myself, bathe myself...that sort of thing.  Otherwise, I'd just wait and see, and generally they'd pass.  I would note, however, when I had a relapse, and what was happening, and the next time I was in front of the doctor, would tell him.

There's never any chance that you'll recover 100%, with or without treatment. The best the steroids can offer is a shortening of the relapse, but that isn't even a promise: some folks do well with steroids, some folks do well on occasion with steriods but the next time do poorly; some folks do poorly on the steriods all the time.  And their long-term side effects are really serious, and well worth considering.  So if the only reason you'd call your doctor is to go on steriods, you might want to consider that, too.

 

I'm sorry you're having so many relapses, though.  I see you're on Copaxone.  I hope you start to see fewer exacerbations, soon!

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 2/21/2007 6:40 AM (GMT -7)   
Thanks for your advice.
My relapses have been mostly weakness, gate or have shown up in MRI's. The last time I got ON it was when I was dx in 05.
I haven't been on Copaxone that long. I need to wait and give it it's full 6 months to decide on if its working or not.

Rhondab
While its frustrating to experience this, it doesn't get me down. I stay as normal as I can for as long as I can. This is my life now and there are only two choices (1) Be miserable and bring everyone down with me or (2) Except it, move on because in between the injections and IV's and MRI's life is still great.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 2/21/2007 7:38 AM (GMT -7)   
Buckeye said...
Thanks for your advice.
My relapses have been mostly weakness, gate or have shown up in MRI's. The last time I got ON it was when I was dx in 05.
I haven't been on Copaxone that long. I need to wait and give it it's full 6 months to decide on if its working or not.

Rhondab
While its frustrating to experience this, it doesn't get me down. I stay as normal as I can for as long as I can. This is my life now and there are only two choices (1) Be miserable and bring everyone down with me or (2) Except it, move on because in between the injections and IV's and MRI's life is still great.
Over time you'll learn to distinguish between "relapses" and "residual symptoms", too...and learn that sometimes symptoms will seem to intensify (usually if you're overtired, or over stressed, or too hot, or some other precipitating factor) --
 
and so you'll feel weak, or unsteady, or your gait will be off, or whatever symptoms you had during your last flare, or exacerbation, will show up again.  That doesn't necessary "count" as a NEW flare...just residual symptoms, stuff that will always be with you.
 
Once the nervous system is sufficiently damaged - -which can happen, over time, or with a particularly nasty exacerbation -- the damage remains.  Much like a scar on your hand -- the wound may heal, but the scar remains, and you might have impaired use of your hand. You can't say that your hand is still "injured" -- just that the scar impedes your use of your hand.
 
I hope that makes some sense.  Too early in the morning....I need another cup of coffee..  :)
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


TG
New Member


Date Joined Jan 2007
Total Posts : 2
   Posted 2/21/2007 3:25 PM (GMT -7)   
Call now I have had ON twice first when i was dn in 2001 and last year my nero put me on iv roids while i was at  work and it fixed the prob.

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 2/21/2007 4:50 PM (GMT -7)   
Hi Buckeye,
 
   Just wanted to say good job on doing each and every one of your Copaxone injections! woohoo!  Hopefully in time you will start to see a reduction in those relapses you are having.  Keep up the good work, and I hope your current flare resolves itself soon.  Best wishes.
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
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MSBLESSED
Regular Member


Date Joined Feb 2007
Total Posts : 70
   Posted 2/21/2007 11:59 PM (GMT -7)   
Hi Buckeye! Sounds like you've got some great advise already. I hope you feel beter soon. I was diagnosed at the end of September of last year with ON and then had an MRI. That was when they started putting all the pieces together. They gave me the steroids fo the ON but it really didn't do much. I started my Copaxone on January 2nd and am sticking with the shots. They aren't bad as I thought they would be. I hate needles. If you haven't heard of Shared Solutions, check them out. They have been a great source of support and information for me. They also work directly with my Neuro to get a rx for the Autoject2, so I never have to see the needle. It's wonderful. Stick with the shots. I still have that MS Fatigue Monster on my back, so there are some symptoms you are just going to have to live through. You're a big boy. You'll be fine!! I believe in you!!! :-) If I can be any source of support, let me know. I care.
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